Amyotrophic Lateral Sclerosis - Philippines

23/09/2026

https://www.facebook.com/share/p/19hQfJK5oX/

Hopeful news for the ALS community! Ionis Pharmaceuticals, Inc. and its partner Otsuka Pharmaceutical Companies (U.S.) announced positive topline results from the Phase 3 FUSION study, evaluating an investigational RNA-targeted medicine for people with ALS caused by mutations in the FUS gene. This research began with Dr. Neil Shneider at Columbia University Medical Center and the person for whom the drug was initially developed under his care. ALS United Greater New York was proud to help fund this research at CUMC. Stories like this remind us why this work matters. Together, We End ALS. Learn more about our research endeavors at als-ny.org.

20/09/2026

Lets' support people with ALS

Help Luisito Continue His Fight Against ALS Our brother Luisito, 47, suffered a stroke last year that left him with significant weakness and affected his mobility. We hoped that with medication and rehabilitation, his condition would gradually improve. Unfortunately, his health continued to deterior

17/09/2026

ALSFRS-R: What Does the Score Mean?

The ALS Functional Rating Scale–Revised (ALSFRS-R) is a questionnaire used by healthcare professionals to track how ALS is affecting a person’s everyday physical functions.

It looks at 12 areas of daily life, including:

🗣️ Speaking
🍽️ Swallowing
✍️ Writing
🍴 Handling utensils
👕 Dressing and personal care
🛏️ Turning in bed
🚶 Walking
🪜 Climbing stairs
🫁 Breathing
🛌 Breathing when lying down
🫁 Using respiratory support

Each area receives a score from 0 to 4.

Maximum score: 48
Lower scores indicate greater functional impairment.

But there is an important point:

One ALSFRS-R score does not tell the whole story.

What is often more useful is how the score changes over time. Healthcare teams may repeat the assessment periodically to monitor progression and help identify changing needs.

Why does it matter?

The score can help the ALS care team understand when a person may need changes in:

Mobility → Nutrition → Communication → Respiratory support → Homecare → Assistive equipment

For families, the ALSFRS-R can turn something difficult to describe—"He's having more trouble doing things now"—into a structured way of communicating functional changes with the healthcare team.

And remember: ALSFRS-R is a functional assessment, not a test of intelligence, effort, or a person's value or quality of life. Two people with the same score can have very different experiences and care needs.

16/09/2026

ALS AND THE PHILIPPINE RARE DISEASES ACT: KNOW YOUR RIGHTS

For families living with Amyotrophic Lateral Sclerosis (ALS), the journey does not end with a diagnosis.

ALS can progressively affect movement, swallowing, communication, breathing, independence—and eventually require complex, long-term care at home.

🇵🇭 The Philippines has a Rare Diseases Act — Republic Act No. 10747.

The law establishes a national framework for people with rare diseases, including mechanisms for:
🔹 Identification and referral
🔹 Specialized medical management
🔹 Rare disease registration
🔹 Access to information and support
🔹 Development of specialized medicines and medical products
🔹 Social welfare assistance
🔹 Recognition of persons with rare diseases as Persons with Disabilities (PWDs) under the applicable law

For an ALS family, this matters because ALS requires more than hospital treatment.

The journey may involve:
🧠 Neurology
🫁 Respiratory care and ventilation
🗣️ Speech and communication support
🥗 Nutrition and swallowing management
🦽 Physical and occupational rehabilitation
👩‍⚕️ Nursing and caregiving
🏠 Homecare
❤️ Palliative and supportive care
👨‍👩‍👧‍👦 Family and caregiver support

A diagnosis of ALS should not mean that the patient and family are left to navigate the system alone.

RA 10747 provides an important policy framework for recognizing the needs of people with rare diseases and their families.

https://lawphil.net/statutes/repacts/ra2016/ra_10747_2016.html?utm_source=chatgpt.com

But awareness is only the first step.

Families need to know where to go, whom to ask, what documentation is required, and what government and community resources may be available to them.

⚠️ Important: The Rare Diseases Act does not mean that every ALS-related treatment, medicine, equipment, or homecare service is automatically provided free of charge. Actual benefits depend on applicable programs, eligibility, implementing policies, and available resources.

📢 Know the law. Know the disease. Know where to seek help.

Because ALS care is not only about keeping a patient alive.

It is about helping the patient breathe, communicate, move, eat safely, remain connected with family, and live with dignity throughout the journey.

ALS awareness must become ALS action.

Republic Acts - AN ACT PROMULGATING A COMPREHENSIVE POLICY IN ADDRESSING THE NEEDS OF PERSONS WITH RARE DISEASE

16/09/2026

Another Story of a person with ALS, watch her story

https://www.facebook.com/share/v/19Q1eWWCUL/

15/09/2026

🇵🇭 Amyotrophic Lateral Sclerosis (ALS) - PHILIPPINES | 2026 UPDATE

🧠 ALS IN THE PHILIPPINES: WHERE ARE WE NOW?

Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative disease affecting movement, speech, swallowing and, eventually, respiratory function.

There is still no cure for ALS.
But there is also an important reason not to lose hope:
ALS care is changing.

New treatments, genetic research, rehabilitation approaches, assistive technology and better supportive care are giving patients and families more options than they had before.

But in the Philippines, we still face a fundamental question:

🇵🇭 HOW MANY FILIPINOS ARE LIVING WITH ALS?

The honest answer is:
We don't know.

The Philippines currently does not have a comprehensive, publicly available national ALS/Motor Neuron Disease registry that can provide a reliable nationwide patient count.

Available studies give us valuable information, but they represent individual hospitals or limited populations—not the entire country.

This is a major gap.

If we don't know how many patients we have, where they are, and what care they are receiving, how can we properly plan for them?

💊 WHAT ABOUT ALS TREATMENT?

Although ALS cannot currently be cured, several approaches may help slow disease progression or manage its complications.

Riluzole
An established ALS medication that may modestly extend survival in appropriate patients.

Edaravone
A disease-modifying treatment available in some countries and used in selected patients, although access and recommendations vary.

Targeted genetic treatment
For people with SOD1-associated ALS, targeted treatment such as tofersen represents an important development in precision medicine.

Research is also investigating therapies targeting other genetic and biological mechanisms.

🔬 Clinical trials

Researchers worldwide are investigating:
• Gene therapies
• Antisense oligonucleotides
• RNA-targeted therapies
• Neuroprotective treatments
• Anti-inflammatory approaches
• Biomarkers
• Combination therapies

Some are promising.
But experimental is not the same as proven.

Patients and families should always ask whether a treatment is supported by clinical evidence and whether it is part of a legitimate clinical trial.

🧑‍⚕️ ALS MANAGEMENT IS MORE THAN MEDICATION

Good ALS care requires a multidisciplinary team.
Depending on the patient's needs, this may include:

🧠 Neurologist
🫁 Respiratory specialist/Respiratory Therapist
💪 Physical Therapist
👐 Occupational Therapist
🗣️ Speech-Language Pathologist
🥗 Nutritionist/Dietitian
👩‍⚕️ Nurses
❤️ Palliative-care team
🧠 Mental-health professionals
👨‍👩‍👧 Family and caregivers

Each professional addresses a different part of the disease.

💪 REHABILITATION
ALS rehabilitation is not about trying to "exercise the disease away."

It is about helping people maintain:
✅ Mobility
✅ Independence
✅ Range of motion
✅ Safe movement
✅ Activities of daily living
✅ Communication
✅ Energy conservation
✅ Quality of life

The rehabilitation plan must change as the disease changes.

🥗 SWALLOWING & NUTRITION
Difficulty swallowing can lead to:
• Weight loss
• Malnutrition
• Dehydration
• Aspiration
• Reduced strength and energy

Early assessment and nutritional planning can help patients and families make informed decisions before complications become severe.

🗣️ COMMUNICATION
When speech becomes difficult, communication does not have to stop.

AAC devices, eye-gaze technology, communication applications and other assistive technologies can help people continue to communicate.

This is becoming increasingly important as technology develops.

🫁 RESPIRATORY CARE
Respiratory muscle weakness is one of the major complications of ALS.

Patients may eventually require:
• Respiratory monitoring
• Non-invasive ventilation
• Cough-assistance techniques
• Secretion management
• Airway-clearance support
• Tracheostomy and invasive ventilation discussions when appropriate

Respiratory planning should begin before a crisis whenever possible.

❤️ PALLIATIVE CARE
Palliative care does not mean giving up.

It can be provided alongside active ALS treatment to help manage:
❤️ Pain
❤️ Breathlessness
❤️ Anxiety
❤️ Sleep problems
❤️ Communication difficulties
❤️ Caregiver stress
❤️ Advance-care planning
❤️ Quality of life

ALS care should always include the patient's goals, values and wishes.

🇵🇭 WHAT DOES THE PHILIPPINES NEED?

The Philippine ALS community needs more than awareness.
We need infrastructure.

We need:
📊 A national ALS/MND registry
🏥 Multidisciplinary ALS centers
💊 Better access to evidence-based treatment
🧬 Genetic testing when appropriate
💪 Accessible rehabilitation
🫁 Respiratory support
🥗 Nutrition and swallowing services
🗣️ Communication and assistive technology
❤️ Palliative and supportive care
👨‍👩‍👧 Caregiver education and support
🔬 Philippine ALS research
🌏 Access to legitimate international clinical trials

📊 LET'S COUNT ALS IN THE PHILIPPINES

A national ALS registry could help us understand:
WHO has ALS
WHERE they are
WHEN they were diagnosed
WHAT treatments they receive
WHAT services they can access
HOW the disease progresses
WHAT support their families need

This information could guide healthcare planning, research, funding and advocacy.

Every patient matters.

Every Filipino living with ALS deserves to be recognized—not only as a diagnosis, but as a person with a family, a voice, goals and a right to appropriate care.

🇵🇭 ALS PHILIPPINES

Our goal should not be to create false hope.
Our goal should be to create informed hope.

Hope based on:
Evidence.
Research.
Better treatment.
Better rehabilitation.
Better supportive care.
Better access.
And better data.

Until a cure is found,

BETTER CARE MATTERS.

🇵🇭 ALS PHILIPPINES

Awareness • Education • Advocacy • Research • Rehabilitation • Patient & Family Support
Let's know ALS.
Let's count ALS.
Let's improve ALS care in the Philippines.

11/09/2026

NIV IN ALS: WHEN SHOULD NON-INVASIVE VENTILATION BE CONSIDERED?

One of the biggest misconceptions about ALS is that breathing problems only appear when a patient is already in severe respiratory distress.

That’s too late.

In ALS, the respiratory muscles can gradually become weak. A patient may initially have normal oxygen levels while already developing sleep-related hypoventilation and rising carbon dioxide (CO₂).

🚨 When should NIV be considered?

Non-invasive ventilation (NIV), such as BiPAP, may be considered when there is evidence of respiratory muscle weakness or hypoventilation, particularly when symptoms or testing show:

• Morning headaches
• Poor-quality or fragmented sleep
• Excessive daytime sleepiness or fatigue
• Orthopnea — difficulty breathing when lying flat
• Shortness of breath
• Weak cough or difficulty clearing secretions
• Increasing CO₂ or evidence of hypoventilation
• Abnormal overnight oximetry/capnography or sleep study
• Declining respiratory muscle strength

Importantly: SpO₂ alone is NOT enough.

A patient can have an acceptable oxygen saturation while CO₂ is quietly increasing because the lungs may still exchange oxygen reasonably well—but the respiratory muscles are no longer ventilating adequately.

🫁 NIV IS NOT JUST “A MACHINE”

For a person with ALS, NIV can become an important component of respiratory management.

But effective NIV requires more than simply giving a BiPAP machine.

It involves:

Assessment → Appropriate settings → Mask/interface → Monitoring → Secretion management → Cough assistance → Follow-up

And as ALS progresses, the respiratory plan needs to be reassessed.

⚠️ The bigger question

Are we waiting until an ALS patient develops respiratory failure before addressing respiratory muscle weakness?

ALS care should be proactive—not reactive.

Early respiratory assessment can help identify problems before they become an emergency.

ALS care is multidisciplinary. Respiratory care is part of that picture.

🫁 Assess early. Monitor continuously. Intervene appropriately.

ALPHA CENTURION MEDICAL CO.
Respiratory Care • Rehabilitation • Home Care

📞 +63 929 495 1673
📍 Carmona, Cavite
📧 [email protected]
📧 [email protected]
[email protected]

09/09/2026

🚨 ALS IS NOT “JUST ANOTHER DISEASE.”

And pretending people don’t need to know about it won’t make it disappear.

ALS can take away movement, speech, swallowing, coughing—and eventually the ability to breathe independently.

Yet too many people still know almost nothing about it.

That needs to change.

If you care about patients, caregivers, healthcare, or simply believe people deserve to be informed—FOLLOW Amyotrophic Lateral Sclerosis - Philippines.

📢 Then SHARE this page.

Not next week.
Not “when you have time.”
Now.

Because awareness means nothing if nobody sees it.

One follow can build a community.
One share can reach a family.
One conversation can change how someone understands ALS.

🔥 DON’T SCROLL PAST ALS.

FOLLOW. SHARE. SPEAK UP.

Amyotrophic Lateral Sclerosis - Philippines — because silence should never be the reason ALS remains invisible.

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